Sunday, February 28, 2016

SB-38: The Quest for Transparency & The Consequences to Advocacy

Bookmark and Share
Noah's blog is filled with posts about our ongoing struggles with Medicaid and Noah's CES Waiver.  It's important for people to know the struggles that we face obtaining services that should be covered benefits for Noah.  And we should document and discuss the real truths of why benefits are being withheld from Noah.  

We started realizing in 2014 that there were problems with his financial statements from his CES (HCBS) Waiver.  What the state had been reporting he spent wasn't at all what he was receiving.  When asked about why they were paying out more than what they should have, the response was they were assessing a 3.5 percent FRE fee (for the cost of doing business) and taking that 3.5 percent fee out of Noah's CES (HCBS Waiver) yearly cap.  This year they reported that he used way more in respite care than he did, as reflected by the respite care provider's W-2, in comparison they pocketed over $4,000 themselves just in the respite category alone.  They reported two different figures for the end of 2015, and neither were correct, nor did they really have an explanation for why I received two very different end of year reporting statements.  

Then in December of last year finally someone took notice that Rocky Mountain Health & Human Services one of Colorado's 20 CCB's (Community Centered Boards) that handle the CES (HCBS Waivers) were found misusing funds in an audit.  You can read the news articles at the following links:

Senator Irene Aguilar sponsored  and introduced a bill called SB: 16-038 on January 7, 2016.  I was hopeful.  Finally.  After all these years, even before Rocky Mountain Human Services got caught with their hand in the cookie jar, I knew there was a problem.  Of course Noah's CCB (Imagine) did their best to deflect any negative perception their way even going as far as to release a Youtube video that can be found here:

After watching this video wouldn't one think that it would appear that CCB's want people to believe that they are not abusing funds that are intended to go to our community's most vulnerable members?  You might think CCB's would support this bill - after all those who have nothing to hide... hide nothing at all.  But Imagine quickly went on the defense and testified before the Senate Committee opposing this bill.  Because they claim they are already transparent "enough" and that it would be too "costly" to be transparent about their financial practices.  Many parents gathered to support this bill statewide, I am not the only one.  But as the CCB's put it, "they have no fear of a few angry parents."

But as parents to severely disabled children we aren't the only ones who should be angry about this.  All of you as tax paying US citizens should be angry. Very angry. You deserve to know where your tax payer dollars are going.  Are they going to help children like my sweet, helpless Noah who is dependent on these programs for his quality of life?  Or are they being pocketed so those managing Noah's benefits so they can pay for things like Costco memberships, or going away parties... and personal internet services?  Who knows where else the money is going, because none of us will ever know that without passing a bill that will force these CCB's into a much overdue audit.

What I do know is my accounting statements are all over the place for Noah, and his CCB is reporting they paid out services on his behalf for things he never received.  So where did that money go if it didn't come to Noah and they report that it did?  These funds don't just roll over year to year.  What doesn't get used in a year - disappears.   And how much money a year does a child have under a CES Waiver Cap?
In 2014 ($36,400) in 2015  ($37,310),  and for 2016 ($37,955).  That's a lot of money.  But Noah's CCB does their very best to deny as many requests as possible to prevent children like Noah from accessing those funds.  The majority of all children under the CES (HCBS) Waiver don't get to access much of that.   If we were allowed access to that complete funding for Noah yearly can you just picture how much better off his life would be?  The recovery and progress he could make? 

To say the least my advocacy and support of SB: 16-038 has continued to ruffle even more feathers.  As the very moment that I was giving a Fox 31 news interview, Noah's CCB left a phone message denying everything before them.  Telling me once again to go appeal it.  As if it were a dare.  I can tell you that retaliation is real.  I can tell you yes without question there are consequences if you attempt to shine a light in spaces that people want to keep dark and hidden.  Parents are hesitant to speak out, as they fear they'll wind up just like me facing even more denials than they were before.  While many support my efforts, few are willing to rise to the occasion of identifying themselves publicly. 

You can watch my Fox 31 news interview here.
I was pinch hitting for another family that was out of town at the time of the media's request for an interview, so I stepped up because there was no one else to talk to the press.  I can assure you my recent media interviews aren't something I find an enjoyable hobby.  But someone needs to stand up so be it, it happened to be me.

I knew I already pissed off the State last July when I brought several issues to the table - including addressing CES funding Caps which resulted in a denial of adapted clothing even though I had an approval for four months a move that was made out of spite after I challenged them making up rules that didn't exist under CES guidelines to block Noah from his covered benefit.  I did get the Order back from the Court and a Judge agreed and reversed their denial.  They had until February 23rd to File An Exception to Initial Decision, and I know I shouldn't have been surprised but they filed a request for a continuance on February 22, 2016 to obtain a court transcript of the hearing, stalling and ultimately after they obtain their transcript can and most likely will still file their Exception to Initial Decision.   So as you can see they make it as hard as they can to make sure you can't even get close to your child's yearly cap.  They now have until March 25, 2016 to file an Exception to Initial Decision to attempt to block me from the Judge reversing their denial.  Mind you I won in court.  I won.  You'd think they'd finally concede and confess that what they are doing to Noah is wrong - especially when you have a Court Order that states what the State is doing is against guidelines. 

When I returned the call of Noah's caseworker after my news interview I was pissed to say the least.  While I wasn't mouthy to the point of being out of line or obscene they knew they had pushed my buttons way to far.  I think they expected I'd just quit with appealing, but I made it known I will continue to appeal and reminded them my track record for winning in Court and reversing their denials is good.  Within twenty minutes after that call I received an email from a supervisor saying they changed their minds on one of the denials and said I could resubmit with more information for reconsideration.  You might be thinking they were playing a nice card.  But I can assure you that isn't the case.  When one of their clarification points being they don't want to approve something because they worry Noah's drool on the floor could be a safety issue, you know they're looking to pick anything out of thin air to support a denial.  And just for the record if Noah drools or throws up or even if he cries tears on the floor I just don't leave it here.  I do clean it up - even if that means I have to spot treat the carpet.

I plan to resubmit the request in fact after I finish writing this blog, but let's just say I already know how this is going to go.

So what's the other mind blowing part... because none of this could be enough to make any parent go crazy right?  

The State also entered a denial for PPod accessories for Noah.  For those of you no familiar with a PPod it's an adaptive seating device.  We paid out of pocket for Noah's PPod by using a credit card a few years ago, but could not afford he accessories he also needed to go with the chair.  I had learned that another family had been approved to receive the PPod so I mentioned I wanted Noah's accessories to be funded.  And asked about the procedure.  Shortly after the other family's PPod went from an approval to a denial and the State gave the reason is they changed their mind because they decided the request was a "home furnishing."  While I strongly disagree that an adapted seating device that only a disabled child can use or benefit from is a "home furnishing." They knew they could not use that basis for a denial for Noah since Noah already owned the chair and simply needed accessories.   I asked how I could get the accessories considered, so they anticipated my request, but I hadn't had the chance to submit a formal request or obtain an OT evaluation - a requirement for consideration.  Yet I got a call saying that they were denying it because they were not permitted to be making purchases for any item outside the USA.  The PPod comes from a UK vendor. 
They cited in the denial I received in the mail for this "anticipated request" :

Section 1902(a)(80) of the Social Security Ac, P.L. 111-148 (section 6505) 8.603.40.A.2.f&g. and 5.f. & 11

What this means:
Section 6505 of the Affordable Care Act amends section 1902(a) of the Social Security Act (the Act), and requires that a State shall not provide any payments for items or services provided under the State plan or under a waiver to any financial institution or entity located outside of the United States (U.S.).

This effects any child under any Waiver in the United States.  This is a big deal.  And I mean big deal.  Countless children seek equipment outside the US and use Waivers as a source of funding to do so.  And here's the interesting part.  Noah has received anti-suffocation pillows from the UK.  I appealed and won disposable pillowcases for those anti-suffocation pillowcases (which are a reoccurring order) also that come from the UK, Noah's life jackets came from Canada... A toilet chair that was granted under State emergency funds (but not the waiver) also came from the UK.   Lots of things Noah needs, like many other children who have special needs, come from non-USA vendors.

So now I'm told I have to re-appeal the pillowcases (even though I already won once...) because of this new rule!

If your head is spinning from reading all of this - can you envision how I feel?  

So where do I go from here?  I don't know.  I don't know how to be silent when I have knowledge of an injustice that is happening.   I don't know how to sit on the sidelines and pretend I don't see it - pretend to be blind to what is happening.   I don't know how to stop caring and feeling so desperate to help Noah and children like him.  But no one is paying attention.  I can write about it, I can give interviews about it... I can try to fight for change... but my voice only carries so far.   I do dream of someone coming to my rescue.  Fighting for me, on behalf of Noah.  I'm so tired.  I'm exhausted in fact by what they're putting me through.

Sometimes all you can do is pray.  Without having any clue that Noah is still being blocked from adaptive clothing - even after a court win and now a continuance likely for the State to seek a reversal, I received a few adapted clothing shirts in he mail as a gift from the Butterfly Fund.  They had no idea that I was feeling beside myself, Noah's skin is suffering badly from nummular eczema, sensitive skin and sensory problems. There are nights when I cry myself to sleep because I don't know what to do.  I cry, pray, cry some more, pray some more.  And I know God sees what is happening and weeps for me.  I know God cares, I know he does or he wouldn't have sent an angel to send Noah shirts - especially when no one knew about what the State is doing by attempting to stall and/or block my win.

Yeah, I might feel defeated,
And I might hang my head
I might be barely breathing - but I'm not dead

Tomorrow's another day
And I'm thirsty anyway
So bring on the rain

Jo Dee Messina


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.